Story of Life, End-of-Life and Dignity

Medical Assistance in Dying (MAID)

Alain Naud MD CCFP(F)CHU de Québec – Université Laval, Québec City

Family Medecine Forum, College of Family Physicians of Canada

Palais des Congrès, Montréal (Québec)

November 10, 2017

Disclosure

Board member, Québec College of Physicians

Board member, CHU de Québec – Université Laval

No conflict of interest with the topic of this presentation

Plan

1) Québec Bill no 2, C-14, SCC

2) Preamble

3) Myths, falsities and misconceptions

4) Assessment and accompaniment

5) Procedure

6) Keynotes

Québec Bill no 2

Québec Bill no 2

Loi sur les soins de fin de vie

An Act respecting End-of-Life Care

http://www.assnat.qc.ca/en/travaux-parlementaires/projets-loi/projet-loi-52-41-1.html

2009, Dec 4 Special parliamentary commission

« Mourir dans la dignité »

« Dying with dignity »

2014, June 10 Bill passed with 81 % of votes

No abstention

2015, Dec 10 Went into effect

Québec Bill no 2An Act respecting End-of-Life Care

June 10, 2014

Includes :

Palliative care

MAID

Palliative sedation

Advanced medical requests (excludes MAID)

Main differences with C-14

Must be end-of-life condition

3 witnesses at signature

No 10 days mandatory waiting time

No assisted suicide

No nurse practitioners, only MD

Assessor must be provider

Mandatory declaration form, within 10 days

No coroner inquiry

All public health institutions MUST offer MAIDonly exception: semi private hospices (28 / 32)

Canada Bill C-14 June 17, 2016

Natural death reasonably foreseeable, with no

prognosis necessary

10 days mandatory waiting time

Supreme Court of CanadaFeb 6, 2015

Grievous and irremediable condition

(illness, disease or disability)

that causes enduring suffering

that is intolerable to the individual

The right to live

must not be transformed into

an obligation to live

Supreme Court of Canadaunanimous 9-0 judgementFeb 2015, Carter decision

Preamble

MAID

is a

clinical, medical, moral, ethical

legitimate and completely legal

CARE

MAID IS NOT a SHAMEFUL care

No patient has to hide from asking

No caregiver has to hide, justify or excuse frombeing involved

MAID is

Everything BUT a simple lethal injection

It`s an end-of-life accompaniment of an incurable,

suffering and hopeless patient

No opposition pall care - MAID

End-of-life options

- Denial of care

- Palliative care (PC)

- MAID

- Terminal sedation

MAID is in no way against PC

With PC and others end-of-life options

MAID is FOR the patients

MAID

is an

end-of-life accompaniment

The only worthy DEATH WITH DIGNITY

is the one a

well informed and competent patient

will choose freely for himself, in accordance with

HIS OWN values, beliefs and convictions

It’s easy to debate or philosophize

over the meaning of death and suffering

when others are facing it

Concientous objection

Well protected by current laws + MD College guidelines

Comes along with obligations

- to withdraw from all the process surrounding MAID

- to transfer requests to a colleague

- to assume or ensure continuity of care

Gives you NO RIGHT to harm process or patient

5 hospitals

• 1st in Québec

• 3rd in Canada

• 2 K population served

• 1 650 MD, Ph, Dt

• 1 700 beds

• 14 000 employees

Located in Québec City

Le CHU de Québec-Université Laval

▪ 4 pall care units

▪ 5 800 cancer patients hospitalised / y

▪ 2 700 deaths / y all causes

▪ 1 700 deaths / y receiving pall care

Raw datas with MAID at CHU de Québec

How many ?

Who ?

How ?

When ?

MAID at CHU de Québec – U.L.

2016 58 patients 2,1 % of all deaths

Up to sept 2017 115 patients 2,1 % of all deaths

MAID in the Province of Québec

2016 461 patients 0,7 % of all deaths

Raw datas with MAID at CHU de Québec

How many ?

Who ?

How ?

When ?

Myths

Falsities

Misconceptions

Physical suffering = only physical pain

Variant: Well controlled physical pain eliminates requestor eligibility of a patient for MAID

FALSE

Physical sufferingmay also be

Uncontrolled physical pain very uncommonly main issue

PSYCHIC suffering the most common, + physical sufferings

Cachexy Dyspnea Dysphagia

Paralysis Complete bed rest Wounds

Hemorrhage Bowel occlusion Exhaustion

Transfusions, punctures, repeated procedures

Patient who receives good pall care never request MAID

Variant: requests for MAID are the sign of a defective access to good pall care

TOTALLY FALSE

Parallel with terminal sedation Experience at CHU de QuébecRejection of pall care by some patientsNumerous requests for MAID in hospices in the province

Good pall care are essentials, but can’t relieve everythingor are denied by some patients

It’s forbidden to talk about MAID with a patient, unless he asks specifically for it

FALSE

Offense to deliberately hide a care that’s legitimate and legal

Obligation to bring up MAID into discussion, when appropriate - inform patient of available options- make sure of his understanding- with no judgement nor influence- respect the patient’s choice

Obligation to set up a date at the assessment visit ?

NO

Assess eligibility

On follow-up visits, make sure that- patient is still able to consent- has not changed his mind

Patient must have tried everything before ?Must have received palliative care before ?

NO

Obligation to inform about alternatives and possibilities

Obligation to respect the patient and his choice

The patient is the only one who can bear witness of his own suffering We owe him total respect

Mandatory 10 days waiting time ?

NO

No such waiting time in Québec Law

ALL end-of-life patients→ at risk of loosing ability to consent

It’s up to the assessor and second professional to decide

Agreement of families - relatives necessary ?

NO

Some family members - relatives are having a difficult time

Uncommon, but TRUE

Death will always be a difficult, unpleasant, even painful experiencePathologic mourning – dysfunctional individuals and families have always existed and will always exist. With or without MAID

MAID hasn’t been introduced to relieve families, friends and relatives

Obligation to protect the ill patient first. The patient is the boss

Assessment

and

accompaniment

Story of Life, End-of-Life and Dignity

Marie was her name…

Marie, 63 y

Married X 42 y, lives with husband

3 children, 4 grandchildren

Manager, financial institution

Practising Catholic

Former smoker, fit, living happy fulfilling life

2015, Feb 14 Pulmonary adenocarcinoma stage IVNeoplastic pericarditis + tamponade3 lines of chemo, including experimental one

2015, Dec 15 Bowel occlusion NGTHospitalized in oncology

2015, Dec 23 Left pleural effusion pigtail tube

2015, Dec 24 She asked to stop chemo. Level of care IIConsultation with pall care team

2016, Jan 5 Level of care III (comfort care)Moved to pall care unit

Current status

• Bedridden• Unable to eat or drink• Weight loss +++ Emaciated +++ • Totally bald• NGT – urinary catheter – chest tube – IV line• Peritoneal carcinomatosis + occlusion• Ascites +++• Countless metastasis

Prognosis < 3 weeks

Medication

• Hydromorphone 0,6 mg s-c q 4 h • Dexamethasone 4 mg s-c qd• Quetiapine 50 mg by NGT qd• Dexlansoprazole 60 mg by NGT qd• Fluconazole 200 mg oral qd• Scopolamine patch q 72 h• Haloperidol 1 mg s-c BID PRN• Lorazepam 0,5 mg s-c QID PRN

• Physical pain quite under control

• Physical suffering ++o Totally bedriddeno Extreme weakness and muscle waistingo Unable to eat or drinko Many uncomfortable tubes

• Psychological suffering +++o Loss of body imageo Loss of dignityo Completely dependent on otherso Remaining time meaningless and worthless

Thursday, Jan 7 Signed request form for MAID

Has already discussed it with▪ Family▪ Pall care MD▪ Hemato-oncologist▪ Social worker▪ Chaplain

Unconditional support from family

Thursday, Jan 7 Call for evaluation request

Friday, Jan 8 Encounter, private room2 h 50 to 5 h 30 PMInvolvement of care team

With ? Husband and childrenWhen ? Tonight !!!

Call MD for 2nd opinion + pharmacistMAID set for next day, Saturday, Jan 9, 11 h AM

Special requests

Empowerment powercontroldignity

Managing the family

Funeral home

Saturday, Jan 9

Daughter + husband overnight with her

10 h 00 AM Visit – confirmation of consentNGT removed – already central IV line

Champagne – coffee – toast + strawberry jamHospital pharmacy

10 h 55 AM Back at bedside11 family members + nurse

Saturday, Jan 9

11 h 00 AM Last farewells + hugs + kisses + whispered words

Totally serene and peaceful

Last confirmation of consent

“ Doctor, I’m ready. Let’s begin ! ”

Procedure

➢ NaCl 0,9 % 10 ml

➢ 1- Midazolam 10 mg 10 ml 30 sec

➢ Xylocaïne 40 mg 2 ml 5 sec

➢ 2- Propofol 1000 mg 2 X 50 ml 5 min

➢ NaCl 0,9 % 10 ml

➢ 3- Cisatracurium 30 mg 15 ml 30 sec

➢ NaCl 0,9 % 10 ml

Course of procedure

Attestation of death at 11 h 10 AM

Back in the room with family at 11 h 40 AM

Death certificate: cause of death is cancer, not MAID

What does MAID bring up NEW or DIFFERENT

to patients?

to families and relatives ?

to caregivers ?

1. « Insurance policy »

2. Relief – appeasement – pacifying

3. Empowerment

4. Always avoid terminal coma – agony stage

5. Allows planning – rituals of this moment with relatives

6. Family – relatives – friends at bedside

7. Communication capability preserved up to the end

8. Last words – farewells – hugs – kisses with family

9. Last words – farewells – hugs – kisses with caregivers

10. Less guilt for families (VS terminal sedation)

11. MD always at bedside with patient and relatives

12. Rapid, peaceful and painless death witnessed by relatives

Sept 22nd, 2016

« If God cannot understand that,I don’t feel like

spending the eternity with him »Old dying and suffering lady,

devoted, practising catholic,

who asked for MAID

« Who am I to judge ? »

Pope FrancisJune 26, 2016

« When you don’t want to see,you don’t see »

Pope FrancisSeptember 11, 2017

6 keynotes

1

MAID is a

medical, clinical, moral, ethical

legitimate and completely legal

CARE

2

MAID IS NOT a SHAMEFUL CARE

which one must hide, justify or excuse from

3

MAID is everything BUT

a simple lethal injection

It’s an end-of-life accompaniment

of a suffering and hopeless patient

4

It’s easy to debate and philosophize

over the meaning of death and suffering

when others are facing it

5

No patient should ever have to pay

with his own suffering

the price of religious, ideological or personal

values, beliefs and convictions of some caregivers

6

There is no opposition between

palliative care, terminal sedation, denial of care and MAID.

They’re all legitimate and legal end-of-care options,

which the free choice belongs exclusively

to the competent and well-informed patient,

in accordance with his OWN values, beliefs and convictions

Thank you